Angie & Jim

Telepackby Jim

When you’re in the intermediate ICU, you have to be monitored constantly.  Most patients (especially the mobile ones) wear a little wireless transmitter to keep them monitored anywhere on the floor.  The hospital gown has a little pocket in the front, but it uncomfortable to carry the telemetry pack or telepack (as I’ve heard some nurses call it) in that pocket.  The other day I remembered that in the past, they’ve had little pouches that sling over the shoulder to carry the telepack.  Since they hadn’t offered us one, I figured I’d just make one.  My mom taught me to crochet when I was a teenager, and I haven’t used it very often, but I still remember how.  I think it is kind of like riding a bicycle — my fingers remember how to do it even if my brain can’t recall the exact motions.

I found a nearby fabric store and went and bought a crocheting hook and a skein of yarn.  I tried to pick a color that went with the very fashionable hospital gown.  I didn’t have a pattern, but I had a good idea of what I wanted to do.  It took me a few hours to finish it (not including interruptions).  I had picked a thicker yarn thinking that it would mean I could use larger knots and therefore make it more quickly.  While this was true, it also meant that it wasn’t as long as a regular skein.  I ended up using the entire length of yarn and it turned out just about right.  Several times while I was working, nurses or doctors came in to check on Angie.  Everyone was surprised to see me crocheting.  More than one laughed and said something to the effect of, “you don’t normally see a man crocheting!”

Once it was finished and we started using it on our walks around the unit, someone always stopped us in the hallway and asked where she got her little telepack pouch.  One of the nurses, when she heard that Angie’s husband had made them, said, “you should sell them down in the gift shop!”

While I was down at lunch the next day, one of the nurses saw Angie wearing it and said, “That’s so cute!  Where did you get that?”  Angie replied, “My husband made it for me.”  The nurse got excited and said, “He should totally make swimsuits!”  Angie didn’t know how to reply to this and the nurse could see the confusion on her face and then the nurse added, “You don’t wear them for swimming, just for sunbathing.  And they put a layer of fabric inside them so you can’t see through them.  But they’re so cute!”

Um… yeah.

The plan is still to go home today, unless something changes, which is always a possibility.  We’ve got oxygen at home now, because Angie’s saturation levels have been somewhat low this week.  The next few weeks will probably be long and challenging and hopefully uneventful.  We have weekly appointments here at Stanford to check up on her condition.  After a month of anti-coagulation, they’ll do the cardioversion.  That will probably hospitalize us for a few days again while she recovers from that.  Here’s hoping and praying for the best.

Thank you all for everything you have done to help us.

Latest Newsby Jim

Today was pretty slow and nothing new developed.  Our going-home plans have solidified a bit and it looks like tomorrow is the day we’ll go.  The doctors want Angie on oxygen at home because it has been so low lately.  We’re all hoping that this is a temporary thing.  Angie’s fluid seems to be down, but not quite as low as they’d like.  Her lung capacity is still diminished, but it isn’t getting worse, so we’ll be okay.  The important thing is to keep her body steady for the next 4 weeks while we wait to do the cardioversion.  It will actually take a lot of diligence, but we’re up to the challenge.

Thank you all for everything you do.  It is really so good to have such supportive friends and family.

Exit Strategyby Jim

We’ve reached that point in our stay here that the doctors are talking about discharge.  We’ve heard different things from different doctors about when it will be, but I think it is looking like as early as tomorrow or as late as Monday.  Personally, I think Sunday is likely when we’ll be free to go.  It is hard to say, and it depends on how the next couple days go.  They are transitioning her to oral medication so that it is more similar to what we’ll be doing at home.  That way we won’t lose our balance when we leave the hospital.

This afternoon, some doctors came to talk to Angie and they said that standard procedure for patients with pacemakers in arrhythmia is to send them home on anti-coagulation medication to reduce the risk of clotting and then after 6 weeks have them come back and cardiovert them.  The complication in our case is the fluid and respiratory problems.  I believe in my last post I may have indicated that they were planning on doing the cardioversion next week, which isn’t true.  Dr. Lui wants Angie to come for a follow-up appointment next week, and the week after, and each week until they cardiovert her after 4 weeks.  During that time, she’ll be taking it easy and we’ll be monitoring her at home.  The doctors also trust us to manage Angie’s health and stay in contact with them throughout each week.  It will be lots of work, but I think we can keep things under control and detect problems before they become dangerous.

One of Angie’s IVs expires today, which means they will probably have to replace it tomorrow (they get 24 hours of leniency), which she isn’t excited about.  I think we’ll request that the crisis nurse come to do it, since they’ve already had a few failed attempts on this visit.  The crisis nurse is a special nurse that covers the whole facility that they call when they need some extra help.  They are nurses that have been here for many years and have experience in many areas.  They are the SWAT team of nurses.  The one that came the other night was super nice and very supportive.  She sensed that Angie was stressed and anxious and so she chatted with us and made her feel better.  As she left, she even reached out her arms to offer a hug (which Angie graciously accepted).  I can’t remember any nurse doing that before.  They really have wonderful doctors and nurses at this facility.

Thanks for reading and thank you all for your love and support.

Gameplanby Jim

I’m sorry but it seems like the post I wrote last night didn’t get published properly until just now.  Let me catch you up on the latest from the doctors.  They’ve decided not to do the transesophageal echocardiogram and cardioversion today.  The rationale is (I believe) that the risk of going home while in arrhythmia is that the fluid build-up could get worse, but they trust us to pay close attention to Angie’s weight and fluid intake/output.  We may go home and have to come back in within a couple days, but if things continue as they have the last couple days, we should be good.  They want to keep her here for another day or two while they figure out the right balance of diuretic medication to get the fluid retention to a safe level (not too dry, not too wet).  They also want to give the medication a chance to cardiovert her chemically.  Everyone recognizes that it is a very slim chance, but it has been known to happen.

So, when we go home our main objectives will be to monitor Angie’s fluid build-up & breathing and to keep her anti-coagulated to dissolve any clot that may have formed in her atrium and the clot that is in her ventricle.  We’ll also have her on her Sotalol, the medicine for the arrhythmia, which might cardiovert her chemically, but if not, when we come back in a couple weeks the drug will help her stay out of arrhythmia.  There is always a chance after a cardioversion that you’ll get right back into bad rhythms.

Well, I have to hurry off to breakfast before they stop serving it.  Thanks for all your thoughts and prayers!

Upcoming Decisionsby Jim

Dr. Lui stopped by a couple hours ago to give us a briefing on what is being discussed among the team of doctors overseeing Angie’s stay here.  Basically, it boils down to this: they want to get Angie out of tachycardia as soon as possible.  The problem is there is a risk in cardioverting her right now because she has a clot in her heart.  They are trying to decide between letting her go home and keeping her on anti-coagulation (blood-thinning) medication and then cardioverting her after a few weeks.  Obviously, that means leaving her heart’s atrium racing for weeks — not a great prospect.  The other option is doing the transesophageal echocardiogram (TEE) to make sure there isn’t a clot in the atrium (where the flutter is) and then just cardioverting her on this hospital stay (probably tomorrow).  This would get her heart back to normal, but the risk of doing a cardioversion with a clot is that the clot will break loose and cause damage in other places, possibly resulting in stroke, heart attack, etc.  They don’t know how long the ventricular clot has been there and what the chances are of breaking off from a cardioversion.  Old clots tend to be sturdier and less likely to break free.

Anyway, Dr. Lui wanted to keep us informed of the options being discussed.  I think they’ll have made a decision by tomorrow morning.  I got the impression that Dr. Lui would really like to not send Angie home in arrhythmia, meaning that he would prefer the TEE and cardioversion.  If they do this, they will probably need to keep her here a little longer while she recovers from the cardioversion (which makes you feel like you’ve been run over by a train).  They would monitor her very closely for the first 3 hours to make sure a clot doesn’t end up where it doesn’t belong.  After that, the risk is very slim that anything would happen.

Dr. Lui told us that we have the final say in whether they do the procedure on this visit.  I don’t think if we insist that they do it if the consensus is that it is too risky.  However, if they decide it would be best to go ahead and do it, we have veto power to say, “no,” and they won’t.  I must admit, I feel a heavy burden in trying to make a decision like this, but we’ve talked it over and we will continue to ponder and pray about this tonight.

Thank you all for your continued support.

A Quick Updateby Jim

We haven’t seen any of Angie’s doctors today (well, the ones who are in charge), but we have heard a few things.  One is that her net fluid is down, which is a good sign.  She’s also lost a couple of pounds from yesterday, which is another good sign.  The not-so-good news is that they’re suspending the Sotalol because of the EKG from last night after her last dose.  Apparently her QT wave is a little extended, which is a bad thing.  If it is too far delayed it can affect the polarization of the next heart beat.  Or so I’ve been told.  The Sotalol is the anti-arrhythmia drug they’re starting her on.  Hopefully we can hear from the doctors soon about what the plan is on this development.

A Slow Dayby Jim

Today was slower and a little better, emotionally, at least.  Angie’s fluid is still about the same, but they’ve increased her diuretic medication, so hopefully that will make some difference.  A few doctors have visited us throughout the day and the plans seem to be about the same.  It appears as though the transesophageal echocardiogram (TEE) will not be done on this visit.  If the fluid doesn’t drain naturally, then a chest tube probably will be done on this visit.  Angie isn’t thrilled about that prospect, but it is so critical that her lungs are clear.  The doctors believe that her arrhythmia could be increasing her fluid build-up, which they also believe might have been caused by fluid build-up.  Kind of a downward spiral, you might say.  The doctors have been listening to us very well, and one of them even gave Angie her cell phone number so she can text her and get clarification when things are confusing or sound contradictory.  They really have been very good.  We can tell, however, that sometimes they disagree about the best path forward.  It is understandable given that they also don’t seem to know exactly what the problem is.  Still, this problem is common in patients like Angie, so it isn’t surprising, it just needs to be dealt with.

During this stay, they’ve given Angie a private room.  They have even brought in a cot for me to sleep in.  It is nice to be with her round the clock, and I know it helps her to have me near.  We’re also outside a noisy hallway, so we close the door most of the time, but then the room gets a little lonesome, I think.  I’ve read a lot to Angie to help keep her entertained and distracted.  We’ve finished book one of The Lord of the Rings (the first half of the Fellowship of the Ring, which is divided into two books).  It is an interesting experience reading about the hardships these characters had to endure from the perspective of enduring hardships ourselves.  Somehow, it makes it much more poignant.

Angie’s been a little emotional lately, as our hospital stay lengthens.  It is hard to endure the waiting and the restrictions.  Many of you have asked if there was anything you can do to help, so now I have a task for you.  Phone calls would become overwhelming after a while; it wears her out to talk a lot.  But, an email, or a text, or a facebook message would probably help to brighten her days.  Just keep in mind that she won’t be able to answer, even though she is very grateful for every thought and comment you may send.  Something that might make her laugh would also be great.  Don’t feel obligated, but if you were hoping to help somehow, go ahead and send her a little something over the next day or two (or three or four…).

Thank you all for your love and support.